The world is going mad: my commentary on so-called mercy killings

I am reading with horror about the support of mercy killings of disabled children by their parents, a discussion recently renewed by blogging friends because of a documentary titled “Taking Mercy”, which aired on Global TV last month. I will pull no punches in my condemnation of the dangerously simplified, lazy and sentimental argument that some people are so disabled that they are obviously suffering too much to live.

It goes something like this: the deterioration of a mother’s children (from a genetic condition) is so painful for her to watch that she wants to ‘mercifully’ kill them. They are adults now and have been institutionalized for most of their lives. (Note that she rarely visits them.) She thinks being put to death is what they would have wanted and that ‘this is no life’, to be fed by tubes and fully dependent – she even plays the old ‘God didn’t mean for this to be’ card by implying it’s not by grand design they are alive, but because of medical interventions. (Has this woman never encountered modern medicine…?) Then, the film solicits soundbites from convicted murderer David (oops) Robert Latimer (who ‘mercifully’ killed his daughter 10 years ago) to offer his sympathies.

They call it a doc although it is anything but. It is dishearteningly shlock-y and biased, and offers up no disability rights advocates to speak on behalf of those targeted with a death sentence. But even more appalling, the show gives airtime and sympathy to people who would directly violate another person’s human rights – soft lighting and kind words from the host as they ruminate on how they wish they were allowed to kill (or did kill) their children.

We have LAWS that support each citizen’s individual rights to live – how is this even a discussion?! And how is this ‘debate’ allowed to take place on public television?!

I have been reading that some people feel this is a private family issue and that it’s for parents to look within their own hearts and decide what is best. Wha..? Killing a Canadian citizen, who has his or her own inalienable rights and freedoms, is most certainly not a private issue.

In this context, it’s no different than condoning honour killings. The child has become a burden and a blight to the parent who can’t bear to abide the ‘suffering’ any longer. In both cases, the suffering is experienced by the parent – they just can’t take it anymore so they kill the offending child.

I watched the video and saw two grown children with severely disabled bodies, very much like Owen’s. I have been in this woman’s position of being the parent to such a person. (“Walk a mile in my moccasins”, she says. ) And I have never entertained thoughts of killing my child to relieve his suffering, and I questioned daily whether he was actually suffering or not. Owen, in fact, lived a full and varied life.

Let’s say we allow ‘mercy killings’ – those two people would be killed and Owen would not. Why? Because of the perspective and capacity of the parent. Hardly an equitable accounting. And most certainly not in keeping with our human rights contracts.

“But what about quality of life?” one might ask. Shouldn’t that be taken into account? In short, no. Full stop.

“But what about the parent’s life? It must be so hard…” Yes, sure can be. Doesn’t justify murder; we don’t kill people because they are inconvenient or too much work.

If you’ve been a reader of this blog for a while you will know that based on my own experience, I believe that:

most parental suffering is externally and systemically reinforced and can in fact be overcome with a deliberate change in perspective and resistance to the ‘status quo’, and

the perceived suffering of someone else who can’t express it is just that – a perception. Which not everyone will share and therefore cannot be universally defined.

Not judging people is one thing, but absolutely we should debate and judge each others’ actions. These issues are not private family matters and in my mind, are not grey areas nor are they complex. These issues are about a society’s ethical and legal obligation to protect its vulnerable populations. It is not for a parent (or anyone) to decide whether or not a person lives or dies (or in this case, is killed) based on their disability, particularly when they are not capable of making this request or decision for themselves.

Millions of people endure “horrific and unmitigated suffering” on a daily basis probably FAR worse than the disabilities ‘suffered’ by Corriveau’s children (war, torture, poverty, enslavement, political oppression, extreme and chronic pain) and don’t choose to kill themselves – so is it an ultimate act of love to kill them all too?

Despite how easy it is to kill oneself, death does not seem to be the remedy of choice for most people in the world who are objectively (and can self-identify as) suffering. In fact, human capacity for suffering is immense.

These issues are not complex or tricky or grey. Rather, I think they are simple: we should not kill vulnerable people because we can’t stand to see them suffer (even, I might add, even if they are actually suffering) or because we don’t know what to do with them. We are ethically and legally bound to allow and protect their right to live.

I. Can. Not. Believe. that I feel compelled to publish this post. I never thought of myself as a disability advocate but this issue just might turn me into one.

___________

Donna Thomson, author of The Four Walls of My Freedom, spoke at Holland Bloorview recently. When I watched this video for the first time, a brief mention of a brilliant thought nearly passed me by. She reads a passage from her book about the Capability Approach, then says she likes it because it positions disability alongside gender, race, language, culture… just one of many possible identities.

Donna shares these thoughts at 1:24.

This is an important revelation for me – treating disability as an identity issue negates value judgements and worthiness arguments. It demands that we protect disabled people’s rights as diligently as we would protect our own–the same way we have come to protect rights for women, people of colour, immigrants, children… Clearly, disability continues to be a stronghold of extreme prejudice.

Jennifer

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34 Comments

Great post, Jen. The trouble with documentaries is that they’re never ENTIRELY without bias. This one sounds like it was distinctly one-sided. Your voice shines out as one who CAN offer a very fair rebuttal to their opinions. Have you contacted Global about this?

Well said! I agree completely. When the Terri Schiavo case was in the news I drove to Tallahassee with my two young kids, one severely disabled, to protest the removal of her feeding tube. The whole thing shocked me then, and saddens me to this day. Great post!

Great post Jennifer! I remember the argument with a local paper publisher I had in 1993 when Shane was a baby. His editorial professed that having a ‘disabled child was every parent’s worst nightmare’ and that Robert Latimer only did want any normal, loving parent would have done to end his daughter’s suffering. The declaration of assumption by one who never even had a child with a disability stunned me then, and it continues to do so now.
I too would like to believe that this issues has been laid to rest, but obviously it is being resurrected again. If you need more voices added to yours on this issues, never hesitate to call! But whatever you do, don’t stop doing what you do so well!!!

I think the Nazi T-4 program should always be mentioned in these discussions because that is where this course leads, to be blunt. The state killed mentally disabled people because they represented trouble and effort. There is no way to gild this issue and make it “altruistic.” It is rotten to the core. I think it is extraordinarily sad that you rarely hear testimonies from the families of these victims as you do the Jewish survivors of the Holocaust. It is like they were erased from the face of history as well as the earth. We don’t exist to make each other comfortable and happy; there is so much more to life than that.

Hi Marie – as I parse through these comments I am coming around to your way of thinking! Surprises me that we’re not unilaterally seeing the slippery slope this issue represents. Thanks for bringing the cold light of day to this discussion.

I am struck at how Latimer has been treated by the press recently. As an American, it appears to me that the Canadian media is trying to rewrite history. Latimer is a convicted murderer. How is it the press is now fawning over him as a merciful man who ended his child’s suffering? I even saw a reference to him as a disability expert on end of life care for children. What happened between the time he was convicted and today? Are larger social forces at play? I find the contemporary Canadian response puzzling.

I’m going to refrain from stating my opinion on this matter because I struggle with it, but I do have a question, particularly as it pertains to the Donna Thomson excerpt which I, too, found illuminating and fascinating. My question is this: how do parents make complex medical decisions regarding their children when they cannot make those decisions themselves: i.e. chemotherapy, hemispherectomy, harmful drugs for seizures, invasive measures to prolong life because they are available, etc. etc. I’m perfectly aware that this is different from “mercy killing,” but why? If I am allowed to give permission to have one half of my daughter’s brain removed with the chance that she might have a “better quality of life,” why am I not allowed to end her extreme suffering and/or my own, if that is the case. At what point IS there self-determination? I am mainly interested to hear what those who claim to be “outraged” and “adamant” in their judgments, those who do understand these issues as black and white, etc. as opposed to those of us who grapple with these things in a more tortured way, conflicted and unsure — above all certain that they are NOT solved in the manner in which they are discussed on blogs and in the public media.

You asked for response from someone with a particular mindset but I’m going to answer anyway, because hey, it’s my blog :)

I gave a talk recently titled ‘ethics in healthcare decision-making‘. The point of my talk was to highlight that despite all of our parental powers and how well we know our children, we are not well-equipped or guided to make these sorts of ethical decisions. Healthcare in general often has an obvious bias and presents information to the parents on its own terms, from only a clinical perspective. Not a good foundation on which to help parents and physicians make good decisions rooted in advocacy. So I agree that this is something to dissect and wonder about.

But sorry E – I think it’s a bit disingenuous to make the leap from making decisions (good or bad) to give a better quality of life, to ending a life because of what we see as extreme suffering. It’s not the same thing, not even on the same scale. People can recover from bad decisions but not from death.

My opinion regarding another one of your points: if there was an unequivocal way to determine extreme suffering and we all agreed what that was and we all agreed we would want to be killed in those circumstances and there is no risk of dissenting opinion – then by all means we should go ahead and kill people in those situations. Until then, we ought make that determination for only ourselves. It’s the ‘benefit of the doubt’ argument, which of course is imperfect but it’s all we have. I’ve learned from my life with Owen that big decisions can get made with utter confidence and then later regretted. Death is too final for that.

Jennifer,
I do not believe that that the human resilience of parents or caregivers is unlimited, it is limited by supports, by poverty, by family, by relationships, by strength of spirit, by life itself. I do not believe that there is any redemptive value to extreme suffering. I believe that we all have a right to determine “advanced directives”for ourselves, that no extra-ordinary measures be taken to maintain a “shell of existence.” I believe that when our children (young or adult) have no capacity to invoke such an “advanced directive”, parents have an obligation to act in a manner in which they believe their children would choose.
These decisions are brutal and leave wounds which never heal and questions which are never answered. I do not believe that these decisions are tantamount to messaging that “this life is not worthy of life” or that disability is devalued. These decisions are ones which lie barren the soul.
As advocates, we are allowed and mandated the ability to make judgments about generic topics, i.e. mercy killing, assisted suicide, euthanasia, murder; I do not, however, believe that we should judge individual brothers and sisters in our world of disability, as judgement is tantamount to condemnation of those who believe they are painfully making the appropriate decisions. Judgment of individual’s actions and beliefs rests in the realm of higher powers.
I honor your willingness to address an issue that many would pretend does not exist and to listen respectfully all views.

My only response at this moment is to say that actions are indeed what we ought to judge each other on. I hold no personal ill will towards the individuals involved in these discussions but certainly would like them held accountable – which means to be judged in a court – for violating another’s human rights.

People can believe whatever they want – I am certainly an advocate for free speech and personal freedoms. What I don’t appreciate is the debate in the court of media and public opinion about something that should not be seen as optional or ‘relative’ – which in Canada is the Charter of Rights and Freedoms.

Here’s where I net out:

You said: “Judgment of individual’s actions and beliefs rests in the realm of higher powers.” Beliefs, yes. Actions, no.

I maintain that there are certain issues that should not be “judged in a court” and I know full well that they will be. I imagine that I would never participate in such a court, or perhaps only as a conscientious objector and leave the condemnation to those more confident of the system (and hopeful that I would not be subject to such were it me in that dark wood).

Another blogger whose opinions I value has blogged about declining to comment. Out of respect I will post my response here on my own blog. Context (in this case) probably doesn’t matter anyway:

I get it. I get the desperation and the loneliness and the helplessness that might drive someone to want to end their child’s life. I also get how a parent would want to murder their daughter’s rapist, or how a desperate girlfriend would kill her partner’s lover. Some murders can be described as crimes of passion, as revenge, as borne out of hate, out of love, out of compassion… Don’t think for a minute that I can’t access empathy for all those driven to commit a crime out of desperation. However, there is more than enough heart-bleeding going around. Who is speaking out for those who would be killed?

The emotions involved are complex because we are human and flawed. But the law is clear, as is our duty to protect each other. Phil says above (sorry for the paraphrasing) that people anguish over these decisions and we shouldn’t judge them. Morever, we shouldn’t judge people who feel they are making the right decisions in the moment… To this I strongly object – this is hardly the grounds on which to determine if someone has obeyed the law or even acted ethically.

A blogger friend seemed a bit irritated that the Nazis were invoked in this conversation, as though it’s a tired or overblown comparison? I am honestly stunned that this isn’t the immediate correlation we all make. At the time, I’m sure they all seemed like a committed bunch of folks who at times wrestled with their souls and suffered for their sins.

Many thanks to all the commenters here – I will continue to publish and respond to all those who post in the interest of furthering the dialogue.

That would be me irritated by the invocation of Nazism. I refuse to correlate the intense suffering of a mother and child and the irrevocable bond between them, a bond and identity sometimes blurry given overwhelming dependency with the acts of a state and institution to create a pure race. I think it’s a ridiculous comparison and a cheap one.

@Elizabeth – I agree that scale and circumstances were entirely different, but see parallels in the unchecked and unchallenged power to determine who lives and who dies based on a slippery set of rules.

With all due respect, I disagree. These are circumstances and incidences that are hardly “unchallenged” and “unchecked powers.” The numbers of people driven to these desperate acts are few and far between — and I have no idea if they are in fact “rising,” or if we have been made aware of them. If so, they are perhaps reflective of a culture that grows ever more intolerant and unsupportive of difference. An interesting correlation to Nazism, though, might include the fact that their rise to power came on the heels of abject poverty, destitution and centuries of intolerance and ignorance. I have much hope in me but also a cold awareness that dark things and thoughts and deeds lie in all human’s souls. I don’t think improvements will ever be made on that slippery slope through the wanton condemnation of mothers and their children.

I understand (don’t agree, but understand) how it is that people bring eugenics and then the holocaust into these discussions but things get kind of mixy—-especially when “obeying the law” is invoked in the same breath. Jewish and French resisters weren’t obeying laws, they were breaking them. Passion was involved.

I haven’t watched the video footage but have been following some of the bloggers, especially older parents of very vulnerable, helpless kids, who have expressed their own anguish over their children’s futures without them. I share that anguish.

Elizabeth’s question about the continuum of decision-making didn’t strike me as disingenuous. Parents are responsible for DNR decisions. The withdrawal of life support could be seen as a death sentence; leaving a severely handicapped person alone to endure years or decades of institutional “care” could amount to a drawn-out, torturous version of the same thing. You are young, and your son was young; you
were there to protect and nurture him all his life. That was a gift.

I see that none of us are changing any minds :) Fair enough – this dialogue can stand as a testament to how differently we see things, despite some of our similar circumstances.

One final bit, then I think I’m done:

I did not write this blog wondering out loud all the ins and outs of this issue, as I usually do. Instead, I am indeed outraged. And I wrote a post reflecting that.

I continue to hold that despite how we might empathize with people in dire straits it is not an acceptable remedy to kill someone whose feelings and desires are UNKNOWN to us. I am not talking about someone in excruciating pain begging for death. I see those two adults in the video, abandoned by the mother who can’t stomach disability who now wants to actively kill them – and they’re shown on camera to prove how miserable they must be. It’s disgusting.

The whole Nazi comparison thing is not a path I care to go down. I sadly know little (or not enough) of the holocaust and will be called out at every turn, chastised in detail how much not like the holocaust this is. So I concede before that happens and will only say that the bits I know are the stuff of nightmares, and I fear any societal acceptance of lawfully killing people who have done nothing wrong and have no say in the matter.

I am indeed young (yikes – almost 42!) and am very grateful that Owen lived and died as he did. But hopefully, A, you are not suggesting I ought have no opinion in this matter? I know all about decisions and DNRs and living in fear and regret and denial and terror of the day when we would all get old. That is essentially what this blog has been about for the last 3 years. I continue to stand in my belief that the act of killing our children in these circumstances is wrong – if it seems judge-y, so be it.

This is an interesting thread. A good discussion by strong willed individuals who share a bond, that bond being disability rights. To me this illustrates how diverse we are, meaning those with with a physical disability such as myself and those who care for a child or family member with a disability. I am willing to condemn those that kill people with a disability, i.e. Latimer or those that advocate mercy killing, i.e. Corriveau. I feel this way as I have directly felt my life threatened, my very existence questioned. I am also struck by how the ADA has utterly failed to create the sort of systemic change that its creators envisioned. Sure we have ramps and our physical environment is more accessible but the social supports are grossly lacking. I encounter prejudice every time I leave my home. Worse yet there is no doubt in my mind modern day eugenics is not only accepted but practiced nation wide. How else do you explain the rates of abortion for Down Syndrome or spina bifida? When I was in college I knew many people with spina bifida. I have met two people with this condition in the last 15 years. Please explain this away.

It seems disingenuous to ask that question, knowing that the severely disabled people at the centre of this controversy are unable to intellectually participate in this discussion.

I would also like to say, the amount of time spent watching your child suffer is not insignificant. Also, there is much more emotional and community support for children with severe disabilities that for adults, which I think is probably a huge factor in a parent’s feeling of being overwhelmed.

The ideal solution of course would be more support for the disabled person and less isolation for the family. As things are right now, while I don’t agree with “mercy killing” of people with severe disabilities, I do have empathy for the parents driven to those thoughts, especially those of adult children.

Where do you draw the boundary line in deciding who is severely disabled enough to be considered for mercy killing and who should live? if it becomes ok at one end of the spectrum, where does it stop? where does that leave those of us with severe disabilities but can still function independantly? i don’t think anyone has the right to decide another’s worth to live, or be elimated from the earth. Only God should have that right.

Thanks for the opportunity to discuss these heated issues. I recommend the beautiful Spanish movie “The Sea Inside,” based on a true story of an artist paralyzed in an accident. I think what I take away from all of this is the conviction that each person’s unique circumstances and experiences shape their conscious actions and that despite persuasive “arg
uments,”based common ground is shaky at best and absent at worst.

And so…I have no doubt that this perilous dialogue has taken place among an exceptional group of loving, caring and knowledgeable parents, care givers, advocates and participants in this experiment called “life.” My desire is that government, law, religion, politics, psychology, ethics, morality and people stay away from my son’s hospital bed … as mom and dad we make the bed daily … we alone know, and that’s the way it should be. You are a great group of people… happy to have been here!

I’m not Canadian, and I wholeheartedly share your viewpoint. I admire and respect all of the bloggers here involved in this discussion, and I think it’s a good thing to be able to debate without personal attack.

My politics are to the left. I just do not condone the killing of the disabled based on the presumption that their lives involve too much suffering and therefore should be ended.

I’m not opposed to pulling the plug on a vent should I or someone I love depend on mechanical support in order to breathe. My own advanced directives are clear on this. I just can’t get behind the idea that someone else has the right to remove a feeding tube, or over-medicate someone who they believe is “suffering”. To me that makes for a slope not just slippery, but made of pure ice.

Not all mothers are loving. Not all fathers are either, nor are they all-knowing. In the case of Schiavo, her mother and the rest of the family wanted to keep her around, but her “husband” who had moved on with his life and was living with a woman whom he fathered children with decided she wouldn’t want to “live like this”. He based it on a conversation they supposedly had at some point early on. There was no documentation of her wishes.

Also, my ex-husband and I don’t always see eye to eye when it comes to our disabled son. I can’t even imagine the lawsuits that would clog the courts if it were ok for one parent to make this decision apart from the other. It’s just a frightening concept to me.

Thanks for engaging everyone in the dialogue. It’s great to be able to speak without being attacked.

@Jennifer- I’m plenty “judge-y” myself; it’s in my nature, for better or worse. I read your blog enough before Owen’s death to understand how strong and independent-minded a mother you were to him and how deftly you created space for his radiance. That’s a somewhat rare talent in the world of special needs parenting, one I appreciate, and it’s the sort of quality that is scarce to non-existent in institutional settings, for obvious reasons. I have no doubt that if Owen were middle-aged and you were elderly, you would still draw on whatever fight and creativity you could muster to assure that he was cherished, not simply maintained. And I think you’d find the view quite altered from your perspective as the mother of a twelve-year-old. Yes, there are parents making DNR and other life/death decisions for their young children, babies, tiny infants. I haven’t experienced that, so maybe I’m not qualified to compare, but it seems to me the worries older parents have about leaving their children without their protection are very different, and that’s what the recent publicity about these killings has brought up for some bloggers who react with sorrow, not rage. This is especially acutely felt by single parents, one of whom has said he would take his severely handicapped daughter with him, if it’s within his power, when he dies. To me, what he’s talking about is love. And those who would condemn either his feelings or, should it happen, his act, I would judge. Harshly and defiantly.

@Tannis- Points well taken, though what I’ve seen expressed
has less to do with overwhelm than with the lack of acceptable alternatives. Acceptable isn’t quite the right word, really, since it risks a connotation of setting the bar pretty low, e.g. acceptable for people who are not highly valued, sensitive or discerning.

Jennifer, I’m curious how your standpoints that quality of life should not be taken into consideration and that parents do not have the right to make decisions for the child apply to certain other situations. To be clear: I am not trying to start an argument; I have chosen for most of my adult life to work with individuals with disabilities, and I far prefer their company to that of most adults! I am simply curious how you see certain situations.

My questions pertain to situations like anencephaly, such as the “Baby K” case, or the cases of conjoined twins where one has no chance at life, and the other may survive if they are separated. Babies with anencephaly, by definition, are not suffering; they have no capacity for it. Continued intensive medical interventions can prolong their lives for two years or more, but without that intervention they almost invariably pass within a day or two at most. Do you see it as acceptable to withhold ventilator support and similar interventions in this case? Or with conjoined twins, where one has not developed sufficiently to survive independently, and has become what doctors call a parasitic twin, is choosing separation acceptable? What about if the dependent twin has brain function? I would appreciate hearing your thought processes with situations like this; they seem clear cut at first look, but some of the things you wrote seem to disagree with that. I haven’t had a chance to read the rest of your blog yet and apologize if you have spoken to this elsewhere.

Hi Emily! Thanks for writing, and I appreciate your curiosity – don’t mind responding at all, although you’ll see shortly that I don’t have much to offer…

To be honest, I haven’t thought much about these sorts of cases that you mention above and I would really hesitate to say that the same opinions I espouse here apply in the same way. This particular outrage of mine was directed at a particular situation, where a parent of grown children with severe disabilities (who had lived many decades and seemed to be thriving and as far as the video showed were not in pain) wants to kill them to put them out of their ‘suffering’.

My argument continues to be that the mere existence of disability itself is not grounds for ‘compassionate’ killing. In this case, the mother’s definition of suffering was their lack of independence and reliance on a g-tube – in my mind, hardly defensible grounds – many live their lives in this physical state and do not ask to be killed. Their quality of life is what she (the mother) would want to put on trial as justification for killing them, and to that I humbly suggest that we can’t judge what joys and pains her children are experiencing.

An outsider’s guess (yes, even the mother) as to their quality of life is rather beside the point and should not warrant a death sentence, particularly as they have never indicated this to be their desire. In this case, we must give them the benefit of the doubt.

The examples you give above are ones I feel completely unqualified to speculate on or to even muster a clear opinion. I haven’t spent 12 years living any of those realities :) No brain? Parasitic twin? Other than being offered the choice to let Owen die in utero with no intervention (which I obviously didn’t take), I thankfully faced no live-or-die/’Sophie’s Choice’ decisions–so these situations, medically and ethically, are deeply unfamiliar to me.

Hi Jennifer! Thanks for responding. I don’t yet have any little ones of my own, so my opinions in this area have all been developed from a professional viewpoint.

My roommate grew up in a small farming community, and she absorbed the attitudes of those around her with regards to “damaged” creatures and expanded it to “damaged” humans. Basically, she looks at all situations from a financial mindset: that there is no reason to pour resources into someone who is unlikely to ever become the vaunted Productive Member of Society ™. We have had a number of, um, spirited discussions on that.

One young lady I had the immense pleasure of knowing and working with for several years would almost be a poster child for the ‘suffering’ crowd; her physical issues range from a near total visual impairment to scoliosis and a bound shunt. She needs assistance to walk more than a couple of feet, and primarily communicates with a handful of idiosyncratic signs. And so on. She wasn’t expected to survive infancy, but I knew her in high school, and she is the light of her parents’ lives. She’s almost always happy, even if she’s in pain and wheelchair bound from a recent surgery. She loves to laugh and dance.

She fits the criteria most of the ‘compassionate’ group calls for: she will never be able to live independently, she needs 24 hour supervision, she is frequently in pain, she is unable to effectively communicate with new people. She just happens to be able to overtly and unmistakably express her joy in life. No, I will never see disability, at any level, as sole grounds to justify the taking of life.